Walking On Water — Shalana Jordan

Walking on Water BANNER

Shalana “Shay” Jordan of central Florida, is a photographer, writer, retired educator, and mom of two boys. She’s navigating life with her “new normal” of battling atypical hemolytic uremic syndrome (aHUS), stage 4 kidney disease, lupus, May-Thurner syndrome, immune thrombocytopenia (ITP), Thrombic thrombocytopenic purpura (TTP), and uncontrolled hypertension. She received her aHUS diagnosis in 2020 at 36 years old.

Being a part of the company that publishes this website, BioNews, means she can take part in helping fellow rare disease patients adjust to the new life that’s unfolding for them. Hearing someone else’s experience with the “unknown” is invaluable. Being rare can be very lonely, but BioNews advocates daily to help patients realize they’re not so alone after all. Because life doesn’t end at diagnosis.

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My hysterectomy was one of the easiest parts of my medical journey

This week marks the five-year anniversary of my hysterectomy, which I unfortunately had to have at only age 37. It was a huge, life-changing decision that would affect any plans to expand my family and could be dangerous if there were complications. This happened 10 months after I nearly died…

The struggles of losing weight when you’re chronically ill

Here in the United States, obesity is considered a common chronic illness. The World Health Organization defines it as “abnormal or excessive fat accumulation that presents a risk to health.” While the obesity rate has been declining since peaking in 2022, 37% of American adults were still considered…

Heart complications were a puzzling part of my aHUS journey

Living with multiple rare and chronic illnesses is stressful, difficult, and complicated. I have four autoimmune disorders and one connective tissue disorder, each of which comes with its own unique set of comorbidities. But the condition that causes the most issues for me is my primary illness, atypical hemolytic…

Patients need more help to pay for rare disease treatment

In the fall of 2020, I experienced a slew of severe symptoms that makes the head spin just thinking about it. These included a 104 F fever, chills, body aches, an upset stomach, a loss of appetite, abnormal physical weakness, deep purple bruising all over my body, an unrelenting migraine,…